It's not a disease that necessarily gets a lot of attention, but there are more than 30,000 people in the United States living with Cystic Fibrosis (CF).
Fourteen year old Gauge Edwards of Nampa is one of those.
To the outside world Gauge appears a typical teenager. Gauge said, “I like to play video games. I like to hang out with family. I love gatherings, parties."
Gauge’s parents, Frank and Trish Edwards were thrilled to welcome their first and only child into this world, but shortly after birth, it became very obvious that something was wrong.
“He was so sick from the very beginning,” Trish recalled. Doctors diagnosed Gauge with CF before his parents even brought him home from the hospital. Trish admitted she knew nothing about the disease, and she was warned against researching in on the internet, but dad did not take that advice.
“I research things that I shouldn’t and find out. It was hard… kind of dark spots,” Frank admitted.
Trish said even with all of the obstacles in his way, Gauge grew into a remarkable young man.
“I’m very proud of him. He’s an amazing person,” said Trish.
But this amazing kid lives everyday with CF, a potentially terminal disease. Cystic Fibrosis is a genetic disorder that mainly attacks the lungs, producing a thick mucus, but it also causes problems with the kidneys, liver, pancreas and intestine.
Gauge has many of these health issues and the medications themselves can cause a whole new set of problems.
Gauge said some of the medications are so strong, he cannot get out in the sun.
“Just 15 minutes in the sun and I’ll turn dark, dark red and get bumps all over my arms. One time, it was so bad, I actually turned purple,” the teen recalled.
Gauge basically lived in the hospital for the first couple of years of his life and Frank and Trish were by his side the entire time, but the stress of a sick child and frequent hospital stays took a toll on their marriage. They divorced when Gauge was only two years old.
“We’re still a family,” said Trish. These parents, along with Frank’s new girlfriend, Tabitha, work together for Gauge.
Frank and Tabitha have now been together for five years. Tabitha entered the relationship with the expectation that it would be different to have a boy in her and her daughters’ lives, a boy with CF.
Tabitha also admits to having no knowledge of CF. She learned quickly just what was involved in caring for Gauge and loving Gauge.
When asked about a bond with the teen, Tabitha teared up and couldn’t answer the question.
Gauge recently spent 30 days in the hospital on antibiotics for a lung infection, further depleting his lung capacity.
Frank explained, “It was at 29% when we left, but now he’s moving around and it’s back up to 31%.”
This dramatic decline in lung capacity forced Trish to realize a hard truth.
“All of the sudden, I realized how sick Gauge is, even compared to other CF patients,” Trish lamented.
Doctors had entertained the notion of a lung transplant for Gauge when he turned 18 years old, but the severity of his condition led the medical team to encourage a risky surgery now.
Hundreds of children with CF are on a waiting list for lung transplants, and now, Gauge is too.
While fearful of the enormity of a double lung transplant, Trish has high hopes.
"I would love to see the day when Gauge can breathe because he never been able to breathe like we do," Trish said.
Though both mom and dad are apprehensive and even Gauge admits to being a bit scared, Gauge still looks forward to the future. "I'm going to be like all the other kids. I'm going to see what it feels like to be a normal kid."
There is not a transplant team in the Treasure Valley to perform the risky surgery. Instead, the Edwards will pack up and head to Houston and a team of experts at Texas Children’s Hospital.
The cost of the surgery and the living expenses while in Texas could easily amount to up to $200,000.
Once on the transplant list, Gauge must be within one hour of the hospital at all times, ready for the life-changing surgery.
Frank and Trish will not be able to work while in Houston because of the doctor’s appointments and testing, in addition to caring for Gauge’s everyday health needs.
This leads to a tremendous financial burden for the Edwards. There is a Go Fund Me page set up in Gauge’s name. While the family is not speaking out to seek financial help, the funds will certainly help the family in this difficult time.
